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I too was diagnosed this year about the same time frame as yourself. I have had both surgery and rounds of chemo like yourself. Everything has been a whirlwind this year and if I have learned nothing else, it is to appreciate the now and live in the moment. At times, this is very difficult to do and to realize we have no control over some aspects of it.
I, too, go to see the surgeon/oncologist in Nov this year. I did a CT scan with my local oncologist and where I received the bulk of my chemo to use only as a base line going forward. The results came in and so far I am clear which is positive. I thought Nov was far away but now that we are into Oct it does not seem that far off. I believe, like myself, you will find this group helpful. If you feel anything, question anything or just want to vent, this is a great place to do it. Not that there are answers for anything but it is great to talk with peers who have "walked the walk". Also, consult with your team should you feel/experience anything prior to your appt. They will still be there for you. I wish you all the best at your follow up and hope to hear your experiences along the way.
You're not alone wishing your follow-up, once primary treatment is over, could be sooner and more frequent. Rule of thumb but dependent on the doctor and your particular circumstances is usually check ups every 3 or 4 months in the first year following end of chemo. That's not to say you wait if you have persistent symptoms that might be worrisome.
I can say though, that in my years of talking to other survivors and using myself as an example, anxiety post treatment is probably the most frequent issue we all face. Think about it this way....we all go through a whirlwind 6 or so months with our lives being managed by our cancer care teams. Regular contact, follow ups, blood work, scans and the all of a sudden treatment ends and we feel disconnected to our life line. Add to that, there is lots of guidance through treatment, whether primary or for recurrence if that should happen, but little preparation and support for that post treatment recovery/surveillance period and that can be scary. So, as I said, you're not alone.
If your cancer centre has a social work department, I urge you to ask your oncology team for a referral. Having some one to talk to about your concerns and anxieties, who can help you help your family manage, and help keep things balanced and in perspective can be enormously helpful. And you don't have to wait for your next oncology appointment to ask for the referral. You can do that now.
And don't try to rush your recovery. If you're tired, rest. If you feel unusual aches or pains, reach out to your cancer care team if they persist. Just think about what your body has endured this past year. Recovery will take time and your patience and the patience of those around you.
Use the Ovarian Cancer Canada website as a source of information to help answer questions and concerns that arise. Do attend the November Symposium. The agenda and registration links should be out shortly and I usually post them on our OVdialogue home page as a Discussion Topic when available.
Please join our weekly online chat...Teal Thursdays. It's at 1pm EDT and all you need do is sign in to OVdialogue and click on the Discussion Topic: Teal Thursday...... and you can immediately begin real time communication with our group. Some days it's just me and one other member....but usually we have at least a dozen on line. Also check out the Ovarian Cancer Canada Events page https://ovariancanada.org/Events/Find-Local-Events The Teal Teas might be of interest to you. They run three a month, one for young survivors (usually those under 50ish), one general group and the third is just for those over years in remission. Those are done on zoom.
Whatever, do stay connected to us. We're here for you...to share stories, answer questions that we can, celebrate successes, and just lend an ear when you feel the need to reach out and just share your feelings. It does get better over time though.
I will be seeing my oncologist next week which is good as I have a long list of questions. I also want to talk to a breast cancer specialist as I don't know if I should consider preventative surgery. Just seems overwhelming and scary but I am trying to celebrate finishing chemo and looking forward to weddings for 2 of our sons this fall. So grateful for this group and hearing that my feelings are normal.
You're doing the right thing by arming yourself with questions for your oncologist to address at your next appointment and for wanting to take the steps to explore preventative measures. You may well come out of that meeting feeling much more in control as you're armed with the facts that will help inform any decisions you may need to make.
Our group is here for you and I encourage you to continue to reach out and share updates on your status. Hopefully your next oncology meeting will be a successful one and put to rest some the anxiety you're feeling right now. Until then though, try your best to just focus on those two wonderful upcoming events this fall. Nothing more exciting and uplifting than a wedding and wow....two of them to look forward to.
All the best moving forward.....
My name is Jaynevie. I'm a 27 y/o ICU nurse who has been recently diagnosed with ovarian cancer (specifically an ovarian germ cell tumour) in September 2021. Being a nurse and now a patient has been an enlightening and humbling experience. I'm to receive four rounds of chemo then plan for surgery. I just finished my third cycle (yay!) and preparing for my fourth. It has been a rollcoaster of emotions but I am trying my best to stay positive, actively looking for support. I am lucky to have found this website and am excited to start meeting you all and hearing your stories. I hope your days be filled with love and light!
I was diagnosed at stage 3c and am happy to tell you that I've had no evidence of disease for a year so far and hope for many more to come. There are so many inspiring stories on this website and the support is amazing from all age groups and stages. Big hugs from Port Credit, Ontario.
Welcome to our community. I am so sorry to hear of your diagnosis, especially at such a young age. But Germ Cell OVC is very rare but most prevalent under age 30. I expect your future is now dependent on surgery and an assessment of stage. Let's hope for good news and the cancer has been caught early and is contained. But there's nothing to compare to the emotional toll those first words...cancer...can elicit. As you read stories here you'll see the roller coaster we all go through. What carries us through? Personal resilience, hope, great people supporting you, and fortunately for us in Canada, trust and faith in our incredibly talented and committed medical specialists.
A few suggestions to you as you begin to reach out to our community and as your journey continues...some of which you may already have done but always worth a reminder.
Use the search bar in the upper right of your screen to access historical conversations on any topic of interest. There may have been some on the topic of germ cell OVC specifically at some point. Every Thursday at 1pm ET I host an online real time chat that I'd love to have you join when it suits your needs. It's great to get immediate feedback...and since topics are often not even cancer related it can be a great opportunity to just put worries aside for an hour with a group who can be lots of fun to chat with. To access the chat, just sign into Ovdialogue as usual and then click on the discussion topic TEAL THURSDAY.....
Monthly OCC runs virtual support groups, called Teal Teas, using the Zoom platform. There are three, one for our general community, one for 10 year+ survivors and one specifically for young survivors like yourself. These are fairly new this year and becoming very valued. The last one this calendar year is this coming November 24 at 6pm ET. You must register to participate. For more information on the Teal Tea and to register go to:
Also one of our OVd support team, @jiselle16, is a young survivor herself and has been very active in the Teal Teas and developing a young survivor community...many of your issues quite different from those of us who are older. I've copied her to flag her.
OCC, and its website of course (https://ovariancanada.org ), is an extremely valuable resource that I suggest everyone familiarize themselves with. Lots of information , stories, resources to access, and videos and programs to support our needs. Especially valuable to the newly diagnosed is the booklet By Your Side that can be ordered soft or hard copy. It's a wonderful tool to help guide you through diagnosis and primary treatment. You can order the booklet at: https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
Please keep us posted on your progress. Reach out any time you have questions, concerns, or just need to talk. We're here and no one in our community travels this journey alone.
Huge hugs for now....
Thank you wonderful and inspiring women for the warm welcome! I'm so happy to hear that despite the stages you all were diagnosed you now have NED. You are all so powerful and resilient for going through what you have and sharing your stories with me. Your strength is truly something to celebrate.
Unfortunately, at the beginning I was misdiagnosed with a dermoid cyst that was to be surgically removed in Nov. Due to the misdiagnosis, my tumour had grown >20cm at a very fast rate and had to admit myself into the ER because part of my right lung had collapsed from a pleural effusion caused by the cancer. I had massive amounts of fluid in my abdominal area as well. But lucky for me, I was admitted into Princess Margaret Cancer Centre and followed by the best specialists who put me on a 4-cycle BEP treatment immediately. I'm already breathing much easier, and no more access fluid! Surgery and assessment of stage is planned for January, based on how I tolerate chemo. Definitely a scary, unexpected time in my life right now, but once again I am staying strong and keeping positive!!
I'm currently navigating through the ovariancanda.org website to familiarize myself and learning how to reply/create discussions. There are indeed many stories and information it's amazing to have all on one platform.
Thank you so much for all your advice and providing resources. I've registered up for the upcoming Teal Tea and looking forward to meeting more wonderfully strong women. Hugs and positivity for everyone from Toronto, ON
So lovely to hear from you again and so happy to hear how well you're doing. Congratulations on your 1 year of remission.
I'm 33 year woman with personal history of breast and ovarian cancer. For ovarian cancer, one of my ovary and fallopian tube was removed. I've a new cyst on other side of my ovary. My gyne oncologist suggested to remove another ovary that will put me into menopause. Because of breast cancer Hormone replacement therapy may not be an option for me. I want to know what are the side effects of surgical menopause without Hormone replacement therapy. I'm going through Google search and it's giving me nightmares.
I don't have any answers for you, but wanted you to know that I'm in surgical menopause currently and so far, so good.
I'm also debating what I'll be doing in the next few weeks (my ovaries and all that jazz were just removed a few weeks ago)
I'm meeting my doc team next week and will be asking all these questions so I'll fill you in on what we do for me.
Thank you so much for the response. I'm glad that you're doing good. Best wishes for your recovery.
May I know if you felt any immediate side effects?
But for me they're not that bad. I get hit with them about five times per day. I notice them in the back of my head first and then hear over my body. I haven't had anything else yet though that I've noticed.
Keep me posted about next steps.
We have a forum called Teal Teas once per month where Teal Sisters gather on Zoom to share experiences and support each other. One of them is specifically dedicated to Young Survivors such as yourself. There are no Teal Teas this month because of the holidays but I expect a new schedule to pick up in January. As soon as it becomes available I will post an update under the Teal Tea discussion topic on OVdialogue. Participation is by registration and the sessions are usually held the last week of each month.
You might also want to check for any archived discussions on your topic by typing in key words like "early menopause" into the search bar on the top right of your OVd home page. And you might also want to search the Ovarian Cancer Canada site for any relevant videos or stories.
Good luck with your journey and let us know any time there is anything we can help with.
I'll wait for the next zoom session.
My ca125 was over 1600 at diagnosis after 4 rounds of chemo, full hysterectomy and 2 more rounds of chemo it was under 20. That was July of 2020, I have not had a recurrence and my ca125 is still in the teens. I too have an extra 30 lbs from steroids, hair does grow back but the mystery is what it will be when it comes back. Mine was lovely and curly for about 6 months 😊
Your positive attitude is wonderful. You got this!!
Keep posting and if you are having a bad day and want to vent, this is a safe space to do so. Your positivity is amazing! You got this!
If you haven't already, do get copy of By Your Side that OCC produces for primary diagnosis and treatment. While much is after the fact since you're now heading closer to recovery stage, you'll probably still gain some additional knowledge to help support the future. You can order it at https://ovariancanada.org/living-with-ovarian-cancer/support-resources Still By Your Side is a supplement for those who's cancer eventually recurs. While none of us like to think of that prospect, it's also handy to have the information "just in case". Both booklets are available in hard and soft copy. And of course the OCC website is chock full of valuable information from survivor stories, educational videos, to the latest developments in drugs and treatment.
I'm glad you chose to become a member of our community here at OVdialogue. This group is over 1000 strong from across the country. As a 24/7 online group you're never alone and we are here to answer questions, share stories, encourage each other and when needed, just be a "listening ear" when needed. Each Thursday I host a live online chat at 1pm ET which you may want to participate in. It's an opportunity for real-time feedback although often our discussions totally bypass the subject of the cancer itself and turn to sharing some of the normalcy in our lives. To participate in the chat just sign in to OVdialogue and click on the discussion topic TEAL THURSDAY.....Those discussions are also archived so you can scan them at any time.
Finally, I urge you to consider participating in the Teal Teas when the schedule is reset in January. One of the three that's run on the zoom platform monthly is specific to "young" survivors given some of your issues are quite specific to the additional impacts experienced by those who are premenopausal. That schedule and the link to register to participate can be found in the OCC website under Local Events. I also post the link on OVdialogue as each schedule is confirmed.
In the meantime, thank you for sharing your story with us. Where you've come from and where you are today is truly encouraging to many of our community, especially those also recently diagnosed or dealing with advanced stages of this disease. It's truly a testament to never giving up hope, especially in this day and age when new drugs and new treatments are constantly becoming available to us.
Wishing you continued success in all aspects of your life and hope we wil continue to hear from you as questions arise or, better yet, when new opportunities arise to celebrate. In the meantime wishing you a very joyful holiday season and health and peace for the new year ahead. Stay well Teal Sister......
I also just want to wish the whole Teal community a happy and safe holiday season. May 2022 bring everyone health and happiness.